Hello, Victorya here.
I’ve had fibromyalgia since 2001.
I am 27 years old now, and 2017 has been a pretty rough year. Job issues, insurance issues, I had found a
medication that works for the first time in my life a couple of years ago but
cannot afford it this year. This also
happens to be my senior year in college, so I was really counting on being
fully functional, but I’ve come too far to quit now.
Chronic pain effects your life in many ways.
When it starts plays a very big
role in how it changes your life. I was
a child, I had to eventually quit dance, and going to school got considerably
harder over time. But I was young. With youth comes resilience. I adjusted, I managed, I learned how to live
with it. I didn’t have bills to pay, I
didn’t have children to care for. By the
time I DID have bills to pay, I no longer knew life without pain. I was used to being this way. When you are an adult with an adult job and
adult responsibilities and the pain becomes significant, whether gradually or
suddenly, it is much more disruptive to your lifestyle. Quitting dance for a child who had always danced
and had never even considered other options in life seems rather disruptive,
but there was still food on the table, a roof over my head, and people loving, supporting,
and believing me. It is quite different
for adults. First of all, there are all
of the doctors appointments. For about
two years, I think I had a new appointment every month at least, trying to get
answers and find a way to fix it. That’s
a lot of time off of work right there, and working is harder with all of the
pain of course, so a lot of people end up taking a leave of absence to just go
to all of the doctors appointments at once to figure it out and get back to
work. When the answer comes, and it says
“this is your life now”, it is pretty shocking news. It is hard to accept that you are just going
to be in pain forever, especially when the pain isn’t just in one place. So then you have to learn how to work like
that, if you can. It depends on your
job, really. Even a nice office job with
a big, comfy chair is going to be difficult with all of this new pain. The pain tends to disrupt sleep, too, so now
you’re exhausted, and in pain, and trying to work 9-5 to keep food on the table
and a roof over your head and pay off all of these doctors who, in the end,
basically just said “deal with it.” You
also have to keep your laundry and dishes clean. You have to keep food in the house, and you
soon learn that grocery shopping is a pretty big task itself, with all of the
walking and reaching and temperature changes throughout the stores.
There is also the emotional toll
that chronic pain takes on all of us. We
try to stay positive, but there are so many things eating away at us all the
time. Humans hate uncertainty. We hate not knowing what the weather will be
like tomorrow, we hate not knowing whether or not that person is going to call
us back about the promotion, we hate not knowing whether or not our favorite
character ACTUALLY died in that cliff hanger season finale, so it stands to
reason that not knowing what our pain will be like tomorrow weighs pretty
heavily on our minds. Some days are
worse than others, and it’s hard to make plans when you can’t be sure if you’ll
feel up to it. This can lead to social
isolation, which of course can cause depression. Sometimes, just the pain itself can cause
depression. Being in pain all the time
tends to do that to people, as does not getting adequate sleep at night. The struggle of wondering how long you can
keep it up, working 40 hours a week and maintaining yourself and your home,
gets pretty difficult after a while, too.
There is also the matter of people believing and supporting you. Nobody expects a happy, healthy, athletic
child to suddenly start lying about pain, or imagining pains that don’t really
exist. This is different for
adults. When an adult suddenly starts
needing to take time off of work for doctors appointments, and because they are
in too much pain to work, not following some sort of accident, there is a lot
of “Why would this start now? You are just trying to get out of being an adult”
and “It’s probably just stress, you need therapy.” Even following an accident sometimes, after a
few months, people start telling adults to “suck it up” and get back to
work. “Everyone has struggles, get over
it.” That is not necessarily healthy advice.
Individual differences are very important to remember.
Most of us
know at least four people, right? They
are all different. They handle stress
differently, some are positive, some are negative, some are pretty indifferent
to everything, and if we all go through an experience together, we all handle
it differently. Maybe we lose someone
that we all cared about. One of us seems
the same as always, one of us keeps talking about it being “part of a plan”, or
how they are just glad that the person is no longer in pain or something. One of us can’t even speak because they are
so upset, but everyone loved that person the same. People just handle things differently. Is it a difference in chemicals and physiological
makeup of our brains? Is it a difference
in how we were raised? It is probably a
little bit of everything. Either way,
this is just as applicable to chronic pain.
For the sake of this making sense and being easier to understand, we are
going to assume everyone I’m talking about with chronic pain is around an
average of a 6 on the pain scale, and they all developed the pain in early
adulthood. Eleanor has always been a
bright and positive person. When her
pain started, she stayed that way, going from doctor to doctor, but over time
her medical funds were exhausted, and she still had no “cure.” Eleanor doesn’t get depressed, but she does
decide to give up. She cannot afford to
deal with it anymore, she cannot do any of the things she wanted with her life,
and she does not understand why this would happen to someone like her. Her health insurance is only willing to help
her on so much, so when it comes time to start trying all of the medications,
some of them are just too expensive. Now
she is in pain all the time, and when applying for government disability checks,
she fills it all out under the firm belief that she can no longer work, go to
school, do leisurely activities, or leave the house unless she knows that they
have motorized shopping carts where she is going. Eleanor is approved for government
assistance. Linda has always been a
pretty neutral person. Nothing ever really
seemed to make Linda feel incredibly sad or strongly overjoyed. Linda has a good job with fantastic health
insurance, and they allow her some time off when the pain starts to try and
figure it out. Upon finding out that it
is chronic and lifelong, she goes through the process of trying every
medication that might possibly work.
While doing this, she continues to work, but notices she is not able to
work as many hours as she used to. She
applies for disability, but because she feels that she can still work some, is
denied. This is exactly why some people
with the exact same conditions, in the same amount of pain for the same amount
of time, manage to get disability, while others do not. This is why we are all stuck wondering, all
the time:
Am I doing enough? Am
I doing too much?
My average
pain level is a 7 without my medication.
With the meds, it’s a 4. That is
life altering, right? But when I no
longer had my medication, I didn’t stop everything I was doing. I couldn’t.
Currently, I have two part-time jobs, I’m a full-time senior at UNT, I’m
part of a research lab team at school, and I somehow accidentally ended up in a
class where I have to do volunteer work with disabled people. I feel like taking care of myself every day
should count, but apparently not. I
cannot afford to quit either of my jobs.
When I finish my bachelors, I will be qualified for some better jobs, so
I can’t really quit school either, or I will just stay stuck in this loop. If I ever want to get into grad school, which
would make it easier for me to get an even better job so I do want that, then I
need this research team crap. I have
been barely getting through each day this year.
I keep getting really behind on house work, and home work. It’s a lot to do, especially when I haven’t
had many nights of quality sleep because of the pain. Here is the thing, though. There are people in as much pain as I am,
there are people with more debilitating conditions than mine, and they are
doing more. Maybe not even more, but
they are doing the same amount as I am and doing it way better. There are also people in as much pain as me,
or less, and they are doing far less than I am.
I look at the people doing more, and those people doing less look at me,
and we all ask the same question: Am I doing enough? Am I trying hard enough? I literally feel like I am doing as much as I
possibly can, so it is really hard to see people doing better than me who feel
as crappy as I do physically. Then
again, I look at people who are doing way less, people like Eleanor collecting
their disability checks, and it’s hard not to wonder if I’m just doing too
much. Am I pushing myself too hard? Do I even need to do all of this?
This whole piece has made it pretty clear that there are a
million differences in everyone’s lives that come into play. Yes, some people are going to do better than
you. Some people are going to have it
easier than you. But only you know how
much you can handle. Keep doing your best,
keep working your hardest. As long as
you know your limits and listen to yourself, body and mind, you are doing
exactly as much as you are supposed to.
You are doing enough.
Here is a photo of me listening to my textbook at work.
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